Content Warnings: Disability/stroke, caregiver burnout, family trauma, suicidal ideation, depression, self-harm, destructive behavior, grief, parent-child role reversal, medical trauma, emotional exhaustion, alcohol use.
I woke confused, to a banging. Dad was shouting for me.
“I’ll be right there, Dad!” I yelled, and put my head in my hands. Wow. That had been a doozy. I must have been even more sleep deprived than I’d thought; that always gives me the weirdest dreams. I wondered how much of the dream had been Dad calling me.
I worried at first that he’d fallen, but my shout had quieted him, and that wouldn’t have happened if it had been a something big. But he wouldn’t stay quiet long in any case. I had to get up still foggy, still trying to remember what was dream and what was real.
He was in his bed in the living room. That’s the only place he could be, if he hadn’t fallen out. I knew what he needed, the same as every morning.
“Good morning, Dad,” I said. Over the months, I’d found the best tone was professional brusqueness. Keep it friendly, but not too positive, or he gets crankier. “Everything okay?”
Obviously everything wasn’t. He was stuck in a bed. But it was the code we’d worked out.
“Yah,” he blurted with a nod. That was the code we’d worked for “I haven’t shit my diaper yet.” So it was a good morning so far, and I started getting him into his transport chair to go two yards to the commode. He managed a half dozen demands and complaints before he was seated. I’d taken too long. Breakfast. Sausages (which digest badly for him). Blow his nose. Go outside after breakfast. Transport chair is…. I couldn’t even make out that complaint, I was focusing on too many other things.
I thought my mental mantra over and over the whole time: It’s not his fault, it’s not his fault, it’s not his fault. Stroke is a bitch. Brain damage is worse. But God, I’m tired, I thought as he strained on the commode. I realized for the hundredth time that I was no more tired than the day before. I wasn’t sure I could remember what it felt like to not be tired.
I wiped him when I was done, and then that was gone. That’s a weird thing that started after a the first month. Once I’m done wiping, I retain no memory of it, just a blind spot in my experience of the day. I really think if someone told me winning lottery numbers while I was wiping him, I’d never even remember it happened once I’d hiked his pants back up.
I made him breakfast. Mashed up his sausages with his eggs, spiced up the whole thing with pepper and adobo so he’d eat it, and helped him with the fork. He could handle bigger chunks now than he could just three months ago, when it had to be nearly pureed. That was good, but didn’t really make it any easier. At least he took his breakfast pills without trouble.
It was too cold, of course. Then too hot. Then too bland. Then too salty. Not enough sausage to egg. No, he wanted bacon instead. It’s not his fault, it’s not his fault, it’s not his fault. After I’d cleaned up and helped him to clean himself with the wipe, he still wanted to go out, so we did. I helped him get seated at the picnic table in the front of the house, which he seemed satisfied with. I put three coins in front of him for his hand exercises and he glared at them. “Can’t make you do it, Dad, but you know you need to,” I said. He tried to smack them off the table, and managed to make the dime fall into the space between two boards. He seemed satisfied with that, too, so I let it go.
As I picked the dime up from under the table, there was a growl of tires on road gravel and we both watched Cliff pull up on the other side of the road. He got out and ambled over with the tape-on smile people used so often when they had to see Dad. Show they’re properly inspired.
“Hey, Nell!” he said as he crossed the street. “How’s Mitch doin’ today?”
Dad started to spit curses that were thankfully unintelligible. Or maybe not thankfully. Maybe people would do better if they could hear what Dad was thinking of them.
“I think he’s wondering why you’re askin’ me instead of him,” I offered.
Cliff’s smile slipped to a grimace for a second, and he looked abashed and turned to Dad. “How you feelin’ today, Mitch?”
Dad just gave a vague wave with his better hand and refused to meet Cliff’s gaze, glaring stubbornly past him at the neighbors’ Douglas fir.
Cliff hesitated, then rallied. “Well, it’s just that Andy’s retiring, and he’d having a thing about it tonight. He was sayin’ he’d like you to be there. If you felt up to it, of course.”
Dad made the wave again, along with a waggle of his head that was not clearly a nod or a shake. Cliff was lost.
“I think he wants to think it over,” I told cliff. “That right, Dad?” I took his pointed nonresponse as a yes. I looked back at Cliff. “I’ll let you know, Cliff. Thanks for stoppin’ by.”
He nodded and weaved a goodbye. “Good seein’ ya, Mitch!” he said as he took a few steps backward toward his car. “Lookin’ great!” Then he grimaced again, hotfooted to the driver’s seat and pulled away.
“Fuk’r” Dad said once he’d gone.
“That’s what you say about everyone, Dad.”
“Yra fuk’r too,” he muttered.
I allowed myself the luxury of a deep breath, and a sigh, clapped my hands down on my thighs. “Been a long time since that was true, Dad,” I said.
After a second, he gave a little cough. Then another, and I realized it was laughter. Then another. And then one more started him coughing for real. And that was the end of that.
Over the next two hours, Dad needed his inhaler, a blanket, coffee (and help with each of twenty or so sips of it), three changes of seating at the picnic table, the bathroom twice, two more medications, a snack, a dozen sips of smoothie, a chapter of his book read to him, his email read to him, and, finally, his nap. I don’t know what I’d have done if he hadn’t needed a mid-day nap. His nap was my moment to rest.
Like most days, once he was asleep, I went to my bed and lay down. Like most days, I spent most of the next hour intermittently crying.
The work wasn’t the bad part. It was soul-crushing, thankless and endless, but, in the end, it was just work. The bad part was the way Dad wasn’t Dad anymore. He’d always been gruff, but he’d also been sweet, patient, and good-natured. He’d been the shoulder everyone he knew could cry on — even his most stupidly manly bowling buddies. Or, for kid, a shoulder you could ride on — one kid on each shoulder.
Like I said, brain damage is a bitch.
I must have fallen asleep after crying. My alarm woke me before Dad did, so I quickly killed it and got up quietly. No use: before I’d made it to the room he was shouting and banging for me.
“Hi, Dad,” I said in my usual tone. “Everything okay?”
“Yah,” he said, resentfully, and gestured across the room. “R’mo.”
I got him the TV remote. He took it in his bad hand, then held the better one out to me, waving it in my face. I focused on it and saw the problem: a wicked-looking black splinter was deep in the outside heel of his hand, and the skin around it starting to darken. He could only have gotten it from the picnic table, probably when he swatted at the coins.
“Christ, Dad,” I sighed. “Well, you caught it before it got infected, so that’s good. I’ll fix you up. Be right back.”
I got the first aid kit from the kitchen, which is the most centrally room in the house. I sat next to Dad while he did his best working the remote with his bad hand, which involved a lot of cursing and some shouts of undefined accusation against the TV, or maybe me. The splinter was in there good and had to be an eight of an inch wide where it was broken off just under the skin. I could make out a good quarter inch of length before it got too deep to see. I wiped the area with an alcohol pad first, then picked up the tweezers.
I don’t know how long I sat there looking at the tweezers, marveling at how good they felt in my hand. Eventually dad gave me a little shove with is splintered hand and I came back to what I was doing. “Sorry,” I said quietly as I lifted his hand back into the light. “Zoned out for a second.”
I tried to work as painlessly as possible, but that wasn’t very. The splinter was a monster, and I had to dig in just to get a grip on it. But one thing that hadn’t changed about dad was stubbornness, and he might have a hair trigger for annoyance or any other kind of discomfort, by it would take a hell of a lot more physical pain than digging around his skin with a piece of metal to get him to admit to noticing. The splinter seemed to come in out one piece. It was longer than my thumbnail, and blood started to well up immediately. I bandaged it up with some antibiotic, then packed up the kit and put it away.
When I got back, I found I hadn’t packed the tweezers, so I slipped them into my pocket to put away later.
I realized I was starving. I walked into the kitchen. I didn’t want a sandwich. I wanted something hot. But I didn’t have time. Then it came to me. Mac and cheese.
I pulled a box from the cabinet. I boil the macaroni until it was soft. Then I poured off the water and added milk, butter, and the cheese powder and mixed it up. Easy. Civilized.
I started getting Dad ready for the “thing” an hour before I’d decided to leave, because that’s how long it takes. Along the way he needed grapes, a pee break, the sports news on TV, three separate rants, and lastly a shot of whiskey, which we have but I knew he’d want at the party so he had to wait.
I wheeled him into the garage, a big two-car that hadn’t held two since mom was alive. I brought him down the ramp to the car, then stopped to look at the other side.
God. I hadn’t touched it since the night I’d got the call from the hospital about Dad. I stepped around the car, pulled aside the tarp to reveal the ugly, unfinished clay. It was long dried brick-hard; even if I could ever get back to it, I’d have to knock off chunks that I’d been planning to smooth away, and start whole limbs over. I tried to remember the face I’d planned for it, but I hadn’t seen that face since we’d broken up a month after I stopped working on it. When I stopped working on my life.
Dad made an impatient sound behind me and I put the tarp back over. I got him buckled into the car and put his transport chair in the back. I got in the driver’s seat, sat back and took a few deep breaths while Dad fumed about the indignity of being put into the back seat, where he’d been relegated since the time he’d had a meltdown and tried to grab the wheel.
It was a short drive to Andy’s and there were already several cars filling the driveway and lining the road. I got Dad buckled into his chair and hoped this would be good for him, because then he might be good. I rang the bell and got back behind the chair. Cliff answered and seemed to have practiced the smile because I couldn’t see as much of the tape.
“Hey, Mitch!” he said, stepping back so I could push the chair inside. He called to the room as we approached, “He everyone! Mitch made it!”
There were cheers from the room as I pushed Dad in. I came around the side so I could see his face. He seemed to be happy with the attention, for now. I knew that that could turn at any time, but I was glad for the moment.
Andy asked Dad how he was liking retirement, and Dad actually laughed. Then he answered unintelligibly to everyone but me, and that’s how they all learned not to ask him any more questions.
Dad wanted his whiskey, so I asked Andy’s wife for a shot in ice and helped him sip it. Everyone stopped to listen every time he burst out with something to say — usually interrupting someone — and I clarified where necessary.
An hour in, some of the bowling team men started telling stories and they soon came around to one of the classics involving dad. They asked Dad to tell it, which meant me telling it with him. After that ended he wanted another whiskey.
“No, Dad,” I said “I already broke doctor’s orders letting you have one.”
“Yah wish-ke!” he slurred. His nostrils were starting to flare and his brow knit in the look that I’d learned heralded a meltdown, and sometimes not by much.
“Dad,” I said under my breath, “You don’t want to get upset in front of all your friends, let’s just have a nice night.”
Except he did want to get upset in front of his friends. A year ago he’d have been mortified to get upset in front of people. But this was now, and this was a different him, and he wanted everyone to see what a terrible daughter he had who wouldn’t let him have a drink. It’s not his fault, it’s not his fault, it’s not his fault. And the meltdown began.
He startled everyone by exploding into curses, aimed mostly at me, that most of the people there couldn’t understand, though a few reacted to the attempted f-bombs. After he’d worked himself up, he threw his glass at me, not coming near me and shattering it on Andy’s fireplace. He started gesticulating as wildly as he could, compensating for lost fine motor movements with extra gross.
I’d already had the words of the apology ready. They held barely a touch of the strain that filled in my chest, my shoulders. My throat felt like a column of stone, but I got the voice out without a hitch, thanked Andy and his wife for the hospitality, wished the company well, and piloted Dad, still waving and cursing, out the door to the car. It’s not his fault, it’s not his fault…
When we got him to the car, he’d grown silent and still but wouldn’t let me get him out of the chair. I got in, shut the door behind me, put my purse in my mouth, and screamed. Then I screamed again. Then I sobbed, the whole time worrying that someone might look out the window and see that I’d left him out there on the curb. I touched the key. I touched it and thought about turning it, felt the accelerator pedal, my foot begging to press it.
I opened the door and was thankful that the meltdown had ended. I opened the back door and Dad offered no resistance when I tried to lift him in, but he wouldn’t help, either. As I tried to buckle him in, he took hold of my coat with is bad hand. I pulled back to see what he needed. Then I realized he wasn’t using his good hand for anything. And he was looking from me to his good arm, back and forth, frantically, but only with his eyes; his head lolled to the side. I was frozen for two or three seconds before I managed to whisper, “Oh, fuck.”
As I pulled out my phone, I shouted out, “Call 911!!!” and hoped someone in the house would hear in case they were a few seconds faster than I was, working hard to resist the urge to drive him myself. Instead, I pulled Dad back out of the car and put him in his transport chair to save EMTs a moment. They were jumping out of the ambulance less than five minutes later.
The ride was a blur. I answered the questions. Six months ago. Listed his prescriptions. Yes, one shot of whiskey. No tobacco, no marijuana, no fall. I’m next of kin.
Then I was in the ER waiting room. Waiting. Then I realized someone was asking me questions. I looked up at the doctor in his blue scrubs.
“The EMTs said your father had whiskey, is that correct?”
I tried to pull useful thoughts from the cyclone. “Yeah. Um. One shot.”
“He shouldn’t have had alcohol,” the doctor said, looking and sounding very stern as he wrote on his clipboard. “It raises blood pressure and increases the likelihood of further stroke. Which is what he’s had.” (what a terrible daughter)
“Um. I know.” I said, “all that.”
“We don’t know yet how bad the damage is,” he continued, tone unchanged. “Some of it may be temporary, depending how bad the occlusion and how quickly we get it removed. But right now he’s lost most voluntary motor function, including speech. He can move his eyes. He can swallow. He can weakly grasp with his left hand.”
“That’s his bad hand,” I said, picking a useless thought by mistake.
“Not anymore,” he said curtly, then finished, “I’ll be back when we know more.” Then he clicked his pen and walked away.
I went back to wherever I’d been before he’d come, but with the winds now ramped up to double speed. I had no idea how much time had passed when Dr. Clark came back. He looked more tired but no less stern.
I tried to listen but his words just joined the cyclone. I made out, “your father will need assistance with essentially all living activities.”
“He already does,” I muttered, mostly to myself.
“Not like this,” he said, checking things off the clipboard. “He can’t sit up. He can’t move his right arm or leg at all. His left arm and leg are extremely weak and his ability to grasp with is left hand is negligible. He can’t hold his head fully erect, though I’m hopeful that he may regain that sooner than the rest. He can swallow, but not chew; he’ll need a liquid diet for now.” He paused a pause that I was meant to hear and went on, “That should not include alcohol.”
He went on. Dad was asleep, his vitals were otherwise good, they’d be keeping him for observation, he’d probably go home in a few days, before that there would be a consultation to instruct me on how to care for him at his new ability level.
Some time after he left, I realized I could leave, realized I hadn’t come by the car, so I called for a ride. I gave our home address, not realizing that I needed to pick up the car at Andy’s until I was already almost home. I didn’t react to the realization. It was a tomorrow worry.
He dropped me off in front of the house. I went in the front door and was immediately struck by the an unfamiliar buoyancy. I had to actually stand still and think to identify it, and when I finally realized that it was that I was alone in the house for the first time in six months, I dropped to my knees and then hands as the numbness I hadn’t realized I’d been carrying was swept away by a tide of sobs that went on and on until my lungs and stomach were too weak for more, and then I still hitched periodically, my diaphragm spasming and vocal cords grating with each short intake.
As suddenly as I’d been struck by the unfamiliar sensation of freedom, it was mitigated by the knowledge of what was coming. A few days. Then he’d be back, and it would all be so much more. All of his progress was lost, and from the sound of it he was worse off now than after the first stroke. What should I do? What does one do with the last of their freedom? How do you prepare?
Finally I knew. I gathered myself up and went to the garage, turned on the lights. I walked up to the sculpture and pulled off the tarp. I looked it over, fully, opened my eyes to every angle, for the first time since I’d brought Dad home from the hospital.
It was good. Maybe not my best, but good. A month of brainstorming, a week of planning, but only a few days of building armature and working the clay had started to take the shape that had been in my heart, but wasn’t anymore. Frozen now, half-made, into stone. I walked to the corner where we kept the sledge hammer and picked it up.
With the last of your freedom, you kill hope.
The first swing loosed some chips. My heart wasn’t in the swing. Neither was my back. The next had both, and it connected. An arm shattered at the elbow. But I could do better. I swung gain, and the arm was gone at the shoulder. Again, and the head exploded. Now I was breathing heavily but it wasn’t from the effort. I found a kind of exhilaration in destroying a past I could never go back to. I was desculpting, taking away what I’d put s o carefully in place. Another swing and the other arm became shards and a few chunks. Then the chest; it was sturdy, so I could get in swing after swing. Not the legs, yet, I wanted to take it out from the top down. Chips of hard clay flew everywhere, scattering on the floor and walls some hitting me on the face and arms, some scratching me as they struck, recycling some of the the destructive energy I was pouring out.
When I finally delivered the final blow to the hips, the legs, no longer attached, collapsed. I didn’t slow, but kept hauling the four pound head up in an arc that became a swoop of annihilator, crushing chunks into shards and shard into powder. It only slowed when my muscles began to tire, and I finally refused to lift it again, and then I threw myself on it and struck the mound with my fists, over and over, then scratched at it, digging at the rubble with nails that must have broken off immediately. It wasn’t enough to destroy it anymore. I needed to hurt it.
I needed it to hurt.
I could feel my hands, raw and broken. It wasn’t enough.
As I lay on the rubble, I felt something in my pocket pressing my hip. I felt it with a mangled hand, without thinking I reached a mangled hand into the pocket and pulled out the tweezers.
My eyes must have gone wide. I felt like I was looking at a fairy gift. I knew this thing. I’d felt like this before, and I’d used this.
I looked at my other hand and found no spot that wasn’t bloody or bruised. No place to sculpt a new line. I looked down at the back of my forearm. It was smooth. I placed the point against the fresh marble of my skin.
I carved.
I woke up.
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